My nineteen year journey as a young onset Parkinson’s disease carepartner has been full of joy, adventures, excitement, challenges and new experiences. When Parkinson’s disease (PD) entered my life, it was not a shock. I met my husband, Karl, post-diagnosis. I’ve never known Karl without Parkinson’s.

At this point, the progression of Parkinson’s is moving slowly with little impact on our lives. The most disruptive part of Parkinson’s at this moment is dealing with the unpredictability of the medications. Not knowing if the medications will work or not work, throughout the day, makes for an always shifting agenda. No plans are set in stone. Decisions are made on a moment by moment basis. During the day, I may say:

“Let’s wait 30 minutes and see if the pills kick in.”

“I’ll drop you off at the restaurant and go park the car.”

“No need to come with me. I’ll run into the store and grab the item we need.”

Being mindful is one of my tools to living in each moment with peace. Zen Master Thich Nhat Hanh’s key teaching is that through mindfulness, we can learn to live happily in the present moment — the only way to truly develop peace, both in one’s self and in the world.

Mindfulness has not always been a part of my caregiving toolbox. I work on being mindful every day with varying levels of success. Of course, there are times where mindfulness flies out the window and anger flies in.

Renowned author and speaker on self-development and spiritual growth, Dr. Wayne Dyer says in his book, The Power of Intention:

“When you change the way you look at things, the things you look at change.”

I find this sentence to be profound. It makes me think differently: change my attitude, change my focus, change my mood, and even change my mindset! This phrase inspires me to set a tone for each moment of my day. I invoke this phrase to improve my own mental, emotional and physical self-care.

How do you view your life? Day? This moment? We all have choices. Do we become so consumed by our carepartner/caregiver responsibilities that we forget we have choices? Optimism can be a choice.

Although we may be unable to change today’s challenge, maybe we can choose to see things differently? Imagine using this phrase as a filter to view your life as a Parkinson’s disease carepartner/caregiver living with daily challenges. If you are always living in the future, you cannot be in the present. I’m not naive enough to think that optimism solves all the issues that PD carepartners/caregivers face.

Take time for yourself to give yourself care. Even the smallest change in your own care can bring you big benefits.

Angela Robb is a Parkinson’s disease (PD) carepartner and Reiki Master who shares and teaches the value of Reiki (ray-key) to the Parkinson’s community.

For many years, as I visited with other carepartners, I stressed the fact that carepartners “needed to take care of themselves so, they could care for their loved one with Parkinson’s”. Last year, I had a personal realization about this phrase. What I should have said is: “I need to take care of myself for me first, my loved one second”.

It’s so easy for us in today’s world to put ourselves last on the “care list”. We put our children, spouses, family, home, work, pets, and so on way before we take care of ourselves. When a chronic illness such as Parkinson’s is also part of the equation, there’s even more of a tendency for carepartners to rush their loved one into the top spot for care.

If Not YOU, WHO?

It is vitally important that the carepartner have a depth of self-knowledge and be willing to ask one’s self “How are you doing today?” or “How am I doing in this moment?”. My realization of this fact came from my study of Reiki and mindfulness meditation. The first level of Reiki is about self-care. Mindfulness Meditation is about being still and focusing on the self, specifically one’s breath. My self-knowledge evolved over time and I’m so happy that it did. I only wish that I had a grasp of this self-awareness sooner! I find myself checking in on my mental, emotional and physical awareness. This really is a practice that you have to do yourself. As much as your loved one, family, or friend ask you “How you are doing?”, they may not be prepared for your true answer. Most of us will not give the true answer, anyway. The true answer is being with yourself and looking honestly at the whole package. I find the following questions are helpful for me. These are just a few examples to help someone to get started. Once you begin an internal dialog with yourself, you will find questions that are best suited to you.

How do I physically feel today? Are there areas which need some attention?

How balanced do I feel mentally today?

How much time can I make for myself to meditate, exercise, <insert your activity here> today?